Struggling as treatments fail
Wed, June 29, 2016 10:42 AM
I was on remicade for about a year. The treatment seemed to help when I started as I was in an acute flare at the time. As time when on I went from treatment every 8 weeks down to every 5 weeks. I then needed to up my dose, doubling it and maxing out on the medication. I never made it to full remission.
I also felt completely drained and weak. I became sick a lot, infections, pnuemonia, staph etc.
I have now had my last treatment with remicade at the beginning of Deecember 2015. I am now alomst 7 months since my last treatment. I had been feeling better over all but for about teh last month my health has started to slip.
I do not know what to go to next. Humira caused medically induced lupus, Pentasa does nothing and I refuse to go back on Prednisone(I rather not feel hungry, fat, crazy AND tired.) I have also tried acupuncture and a nutritionist...
I am currently still taking Pentasa, MCT oil, fish oil, pantoprozole, multi vitamin, tirosint and tumeric.
Has anyone been in this position and where did you go from here?
I am at the point where i have a very low quality of life. I am extremely tired, my stomach feels like I just ate THREE thanksgiving meals at once and I get flush a lot. I am not having TERRIBLE GI symptoms though. It is not perfect obviously but that aspect has been much worse before.
I feel like I am running out of medical options but I don't actually feel better. I am afraid this is my life.
badbellyJoined Jun 18, 2015
Fri, January 06, 2017 10:47 PM
Reply posted for badbelly.
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healerJoined Dec 29, 2016
Mon, September 19, 2016 6:39 AM
Reply posted for petecurecolitis.
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badbellyJoined Jun 18, 2015
Sun, September 18, 2016 8:11 PM
Reply posted for badbelly.
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petecurecolitisJoined Sep 17, 2016
Sun, July 31, 2016 11:21 PM
Reply posted for badbelly.
I was on remicade and was still having syptoms so my doctor also started me on imuran. I've been on both for a little over a month now and am starting to feel better. Have you tried imuran?
Joined Jun 17, 2015
Sun, July 24, 2016 8:06 AM
Reply posted for administrator.
Hi bad belly ,
I guess I came to this forum so I could know if other people felt like me. I can't really help you because I'm in the same boat as you. Sometimes I'm ready to give up and other times I don't want to give in. I'm really just tired of being sick all the time. That's all my life is. It's like 10 months out of the year I'm miserable. Nothing has worked for me on a consistent basis. I need something to change because I'm tired of being depressed. This really isn't who I am or want to be. I don't tell anyone all the thoughts and feeling that go through my mind because it's embarrassing. One thing I try to do is remind myself it can always be worse. That helps, sometimes. This is probably too long already. I probably wouldn't want to read a post this long so I'll finish here.
rangerstown24Joined Jul 24, 2016
Thu, July 07, 2016 9:24 AM
There may be more treatment options to discuss with your doctor. Our fact sheet called “Recently Approved Treatments” provides information on new medications that you may not have tried yet http://www.ccfa.org/assets/pdfs/recently-approved-treatments.pdf . Discuss these treatment options with your doctor. Also check out our brochure called “Managing Flares and other IBD Symptoms” at: http://www.ccfa.org/assets/pdfs/Managing-flares.pdf .
It is always helpful to speak with people who understand what you are going through. Many Crohn's and ulcerative colitis patients and their families find support groups to be a valuable resource for information, support and guidance. If you would like information on local support groups and educational events in your area you may go to the following link and click on your state: http://www.ccfa.org/chapters/. CCFA also has a program called “The Power of Two”. Through this program you can be matched with another patient for telephone or email support.
Finally, if you just want to talk, call or email the IBD Help Center at 888-694-8872 or info@ccfa.org and speak with an Information Specialist.
Joined Oct 12, 2017